FAMILY STORY

The Sagons’ Journey with HNRNPK

You are their voice.

Aneyce Sagon, mother of Kaydian, a 3-year-old living with HNRNPK-related syndrome

What is your family like?

My family is just an average family. It’s three of us including my son, my daughter, and then there’s me.

What do you do for fun?

I can dance, but shopping is my hobby.

Tell us about the biggest hardship you face.

The biggest hardship I face is my son having a syndrome that I have no idea of how life will be for him, as right now it’s difficult.

What is one question you wish researchers could answer about this genetic change?

One question I would like researchers to answer about this genetic change is why was it undetected during pregnancy and infancy, but later presents itself as hypotonia around 2-3 months old.

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?

One piece of advice I would give to somebody who was just diagnosed would be YOU ARE THEIR VOICE. If you talk for them everything will be fine.